From one kidney donor, hope for others

Welsh laughs about her "splint" pillow, used to support her abdomen during recovery - it's kidney-shaped. She had become part of a medical phenomenon: The world record is 30 kidneys in one chain.

By Michael Vitez, Inquirer Staff Writer

Posted: November 18, 2013

First of two parts.

On Monday, the day before her surgery to donate a kidney to a stranger, Theresa Welsh had butterflies, and paused really for the first time.

Was she crazy?

At 55, the Haddonfield pediatrician planned to give up her left kidney in the morning to start a kidney chain, a new phenomenon in medicine. Her donation would trigger a chain reaction of giving: Five people with kidney failure, each gravely ill, would receive a transplanted kidney, restarting their lives.

So why did her sisters almost stop speaking to her, have sleepless nights?

Mike Campbell, her husband, a Villanova law professor, was the one person she had given veto power. He had evolved from "totally opposed" to "just conflicted." He hated roller-coaster rides and viewed this whole affair the same way, shutting his eyes until it was over.

At 10:30 p.m., she was on the computer looking for her living will and making a list of their investment accounts and passwords, "in case I do not make it, and Mike needs to know."

At 5:30 a.m., Mike was driving her to the hospital.

One hundred yards out of the driveway, she turned to him:

"If I die, it's not your fault, and you should have no regrets."

"I would never forgive myself," her husband replied, "but I know how much this means to you."

Mood of the moment

By 6:30 a.m. Oct. 22, she was in the peri-operating room at Thomas Jefferson University Hospital - right outside the OR, sitting up on a gurney in a surgical gown. Nurses and anesthesia doctors bustled about. Her tiffany blue fingernails, painted for a recent bridal shower, contrasted with the mood of the moment.

In walked her surgeon, Adam Frank. He has performed 200 donor surgeries, but told her weeks before that what she was doing - while "clearly heroic" and "the highest spectrum of selflessness" - he wouldn't recommend. Surgery has risks.

Welsh didn't have her glasses, so her surgeon reviewed the consent form she had to sign. "You were very well-imaged, so I don't expect any unforeseen circumstances," he said. Still, he cited the terrible things that could happen - blood clot to the lung, injury to other organs, stroke. . . .

"That covers it," Welsh said, signing.

She was relaxed and calm, confident. The world was completely familiar, though upside down. She was always doctor, not patient.

"How does my kidney get transported?" she asked the surgeon.

"By commercial airline," he said.

"When will the recipient get it?" she asked.

"Tonight. His surgery is scheduled for 6 p.m."

This pleased her immensely, and she smiled.

Seconds before being wheeled into surgery, literally a moment of truth, Welsh was asked one last time why she was doing this. Was this decision driven by her faith?

"More by my faith in medicine," she said.

A preliminary sedative began to flow. Before she hit the double doors to the operating room, she was out.

A new board member

Last winter, an old friend and former neighbor, George Francos, medical director of kidney transplant at Jefferson, was looking for a new board member for the Delaware Valley chapter of the National Kidney Foundation.

Kidney disease doesn't get the same attention as, say, Parkinson's disease, with actor Michael J. Fox as its advocate, or breast cancer, with professional football and baseball players wearing pink cleats.

But 26 million Americans have kidney disease. People with diabetes, hypertension, and obesity are particularly vulnerable. More than 400,000 are tethered to dialysis machines. Ninety-eight thousand wait for kidney transplants; 5,000 die waiting every year.

Francos wanted Welsh on his board, not because she was a doctor, but because of her energy.

"I saw her go on one of these bike rides from city to shore," he said. "She had one of her kids pick her up, and then she cooked dinner for 15 people. She makes me short of breath just being in the same room with her."

Welsh went with Francos to the 28th annual Kidney Ball on March 9 at the Hyatt at the Bellevue, a black-tie affair. Welsh was smitten, not by small-time celebrities Dweezil Zappa and Bobby Rydell, but by the larger-than-life actions of everyday people who had donated kidneys to loved ones and felt great about it.

She also heard Francos give a short speech about the new phenomenon of kidney chains, and the power of one altruistic donor to set a chain in motion, to help 10, 20, even 30 people get kidneys.

The concept was simple: A man needs a kidney and his wife is willing to donate, but they are not compatible. His body would reject her kidney. All across America are pairs just like them: one in need, the other incompatible but willing to give.

In steps the altruistic donor, who gives a kidney to the husband in that first pair. His spouse then donates her kidney to the needy person in the second pair, whose partner gives up a healthy kidney and keeps the chain going. Everyone has been screened to make sure all people giving and receiving kidneys in this chain are compatible.

The world record is 30 kidneys in one chain.

At the Kidney Ball, Welsh began to think this was something she could do.

She had seen the impact of kidney donation firsthand. A nurse in her pediatric office had a husband who suffered from kidney disease, was on dialysis, and had been at death's door when Welsh visited him in the ICU.

Then he received a kidney from a second cousin. Welsh saw this man return to "an active life with his family and grandchildren." The donor was a mother whose children were Welsh's patients. In Welsh's eyes, the donor, who had resumed a normal life, was a VIP. When she brought her children to the doctor, Welsh always tried to whisk her through.

Window of opportunity

For months, the idea percolated.

On a Friday afternoon, July 14, Welsh was sitting alone on the beach in Longport. She had a water bottle, her Kindle, and time to think as expansively as the sea and sky before her.

She was in excellent health and still young enough to donate. Her five children were grown and thriving. Now was a perfect time. But she also knew her window of opportunity was closing.

Her only daughter, and second child, Claire Campbell, 28, a resident in internal medicine in San Francisco, was pregnant with their first grandchild, due Dec. 9. Welsh had already bought her plane ticket for Dec. 13.

"Once I have a grandbaby," she told friends, "my life is all about the grandbaby. I'm going to the grandbaby."

Sitting in that beach chair, Welsh read a book her oldest son, Mark, a lawyer in New York, had shared - Never Eat Alone, with the premise that you help yourself by helping others. Welsh finished a chapter that said, basically, act on your goals before the opportunity slips away.

In the clarity of that moment, she decided she would donate her kidney. But they better take it quick. There was no doubt she would donate her kidney at Jefferson, where she had gone to medical school and where two of her children had recently become doctors. She called the transplant team that Monday and set it all in motion. In her mind, she saw it as a "nuisance for one month, and I'll be right back."

Her son Mark, uneasy with the decision, felt mildly responsible.

"I feel like I gave caffeine pills to someone with ADHD," he said. "A motivational book to a type A personality is a dangerous thing."

A life of diving in

When Theresa Welsh was 3, growing up in Springfield, Delaware County, the fifth of six children, she stood on the edge of a swimming pool, watching her father teach her older sister to swim.

"Jump!" her dad implored.

Her sister froze.

Theresa jumped.

That is pretty much how she has lived her life. Since she was a little girl, Theresa Welsh dived into things, without fear, always optimistic they would work out. For the most part, they always had. And if they didn't, she had a short memory.

Growing up, she and all her siblings went to St. Kevin's elementary school, Cardinal O'Hara High School, and Villanova University.

"My Catholic faith means a lot," Welsh said this fall. "I think it's more of a universal good that we need to follow, not necessarily the Roman Catholic Church, but that theme of helping others."

Her own children growing up saw this in action. On top of being a physician at Advocare Haddonfield Pediatrics Association, Welsh was always helping out friends in need, particularly when sick, rearranging her work schedule to go to doctor's appointments with them, sharing her medical knowledge.

She regularly gave blood, and signed up to donate bone marrow, though she was never called.

"This is an ordinary thing," she said of starting a kidney chain, "and I am not anybody special, except perhaps more of a risk-taker and optimist than most."

On the table

In the operating room, they sedated her so deeply that her lungs stopped working and she was intubated and attached to a breathing machine. This is normal. She needed to be that sedated to have doctors cut out an organ. Welsh was rolled onto her side, taped and strapped to the table, blankets covering her to keep warm. They even taped her eyes shut.

She was then draped in sterile blue sheets. They built a tent of blue sheets around her head and shoulders, literally shielding her from her own surgery. All that was exposed was a square of her abdomen, on which earlier the surgeon had drawn a line, the length of a birthday candle , from the belly button south.

After an hour of prep, he finally began to cut.

"Incision: 8:23 a.m.!" someone yelled.

Siblings' apprehension

Though they deeply admired her for it, her siblings had tried their best to stop her. Anne Welsh McNulty is a formidable person, on the boards of the Wharton School of Business and Villanova University.

"I have visions of all of us hanging out together into our 90s," McNulty said, "and I didn't want to lower those probabilities.

"I argued the research - little long-term tracking of donor health issues. Argued the alternatives - that there are many ways for her as a doctor to contribute in ways that would better leverage her experience and skills. I even argued public policy - that the big issue is that thousands of people need donors and that a broader, more creative, more effective organ-donor program would be better.

"But, of course, Theresa was not swayed."

At the end of a long late-night e-mail Aug. 23, daughter Claire said: "I think you are making a big sacrifice by donating a kidney. It's more than I think I could ever do for a complete stranger."

Claire had read and sent her mother several journal articles and felt better, believing the risks were very low. "That being said, I now see things go wrong that shouldn't, so I would still be nervous."

A Gospel story

As much as the kidney donation terrified him, Mike Campbell knew he could never ask his wife to stop.

"To stand in the way of this," he said, "of potentially saving somebody's life, it's like booing Mother Teresa."

As Campbell thought about her motivation, he was struck by a Gospel story, about a man who asks Christ how to get into heaven. The man said he followed the Commandments, but Christ urged him also to give away his riches.

"It's basically give away the gifts that you have," Campbell said. "Theresa is one of the few people I've met who could do that. We have different gifts, and she has the gift of good health."

Three little holes

In addition to the incision, the surgeon cut three little holes in Welsh's abdomen - imagine three points on a triangle.

In these holes went a camera, a retracting tool, and the actual cutting device, all at the end of what looked like long knitting needles.

With his left hand, Frank would reach through the incision into the abdomen and move tissue around. Using the scalpel-like device he controlled from outside with his right hand, the surgeon began cutting a path to her kidney.

Madhu Siddeswarappa, a resident from Mercy Fitzgerald Hospital, controlled the camera and retractor from above, through the other holes.

The surgical scissor Frank used was called a Harmonic Scalpel. It actually used a high-energy beam, rather than a sharp edge, to cut and seal the tissue and prevent bleeding. As it cut, it made a musical sound.

To reach the kidney, the colon, spleen, and pancreas all had to be moved out of the way.

As the surgeons worked, their eyes focused on a giant television screen above the operating table. In fact, the operating room looked like a sports bar: screens all over the place so everyone could watch from whatever vantage point.

It took hours.

Frank was deliberate, careful, in control.

But in moving the spleen, he nicked the sack around it. It started to bleed. He noticed this immediately.

In the work-up for surgery, Frank had studied 847 images of Welsh's kidney. There wasn't anything to indicate moving the spleen would be unusual. But as he himself had said to Welsh weeks earlier, "There's always potential for complications."

Maybe this was why her sisters had lost sleep.

Calm, deliberate, he got a different surgical tool, cauterized the tear, and stopped the bleeding - quickly addressed and ultimately inconsequential.

He kept moving.

By 10:45 a.m., he was almost there.

A few basic snips

After all that delicate work to get there, Frank gently grasped the kidney in his left hand. A few basic snips - the artery leading in, the vein leading out, and the ureter, which carries urine to the bladder - and it was free. He stapled the blood vessels tight, titanium that will stay with Welsh for life.

He pulled the kidney out of her body and lay it gently in a plastic blue basin, handing off to a fellow surgeon, Ashesh P. Shah, who had joined him.

The new surgeon cared for the kidney.

Frank stayed with Welsh.

"She's doing great," he announced. "No problems at all."

He did take a moment to walk over and examine her kidney, perhaps to admire it. It was small, a healthy red, and covered partly by a yellow layer of fat. This was a good thing.

"We call it a boneless chicken breast," said Crystal Harper, a profusionist with the nonprofit Gift of Life, who was standing by. Her job was to transport the kidney to the airport.

Once prepared, the kidney was placed into a plastic container that looked like carryout soup from a Chinese restaurant.

Harper packed it in a small cooler with ice - along with a GPS tracker - and carried it outside to meet her courier.

At 12:15 p.m., after nearly five hours, Welsh opened her eyes, stirred, and appeared responsive. She was wheeled to recovery.

Frank peeled off his gloves and scrubs, put on his white coat, and changed his shoes before finding Campbell in the waiting room.

"I wish I could say it was completely flawless," he added, and began to explain the small tear in the spleen.

The husband's expression turned from relief to concern. He slowed down the moment.

"OK. Describe what that was."

"When we go to take an organ out, we have to move other structures away from it, and the spleen is one of those structures," Frank said. "Typically, I like to have the spleen be completely unperturbed. . . . In this case, I wasn't able to execute that perfectly."

Frank said he didn't think he could have avoided the tear, explained how he repaired it, and assured Campbell that it "won't matter one bit." He said his patient was groggy but doing well, and "I think she'll come through it fine."

Campbell felt much better. He just wanted to see his wife. He hurried to recovery for a quick visit.

He kissed her. Said he was proud of her.

He came out and immediately texted his children and extended family:

"Theresa was the picture of confidence going into surgery, and triumphant (but exhausted) in the recovery room. The doctor said 'he had to move a few things around in there' to get to it. My assumption is that her heart was taking up most of the space. Her only concern was that everyone know she is fine."

Her kidney was now flying across the country.

Kidney Disease and Transplants

The humble kidney filters waste from our blood, controls the body's fluid levels, and regulates our salt and other key chemicals. Those with diabetes, hypertension, and obesity are especially at risk of developing kidney disease.

26 million Americans have kidney disease, which kills more than 90,000 Americans a year - more than breast and prostate cancer combined.

More than 400,000 are on dialysis.

98,000 are waiting for kidney transplants; about 3,000 are added each year.

Nearly 5,000 die waiting each year.

The number of kidney transplants has stayed flat since 2007, reaching 16,812 last year. Only 5,769 were from live donors.

The National Kidney Registry says it started its first chain on Valentine's Day 2008 and has now done 167, leading to 771 transplants.